Visionary VoicesInterview with Graynle Edwards, PhD January 23, 2013Part I

Chapter 1: Childhood and Family

10:59:42:20 – 11:00:00:29

Q. My name is Lisa Sonneborn and I’m interviewing Doctor Graynle Edwards, um, on January 23rd 2013 at Temple University, Philadelphia PA. Also present is Oscar Molina and Dr. Edwards, do I have your permission to begin our interview?

A. You have my permission.

Q. Thank you.

A. (Laughs)

11:00:00:29 – 11:00:17:16

Q. Even though I know your name I’m going to ask you if you would kindly restate your name and your current working title.

A. Graynle Edwards. Uh, Adjunct professor at Lincoln University teaching Environmental Sciences.

Q. Thank you. And Dr. Edwards, can you tell me when and where you were born?

11:00:41:19 – 11:00:46:16

I was born in Philadelphia, December the 7th 1936.

11:00:46:16 – 11:01:03:29

Q. Um, Dr. Edwards, you’re the parent of a man with an intellectual disability, Graynle Edwards Jr. Um, we’re certainly going to be talking about your son during this interview, but first I wanted to ask you a little bit about your own background. Um, I knew that you grew up in North Philadelphia.

A. That’s correct.

11:01:03:29 – 11:01:36:28

Q. Mm Hm. Can you tell me a little bit about your family? For instance, did you have brothers and sisters?

A. Yes, I had, uh, four siblings; one brother and three sisters. Uh, I was the youngest of the clan. Uh, the older sister was nine years older than myself and uh, the next one is four years older; three years older. My brother’s about a year and a half older. (Laughs)

11:01:36:28 – 11:07:03:13

Q. How would you describe your parents?

A. It’s an interesting household. We had, um, Attila the Hun, and we had uh, uh, uh, what was it? Uh, Nightingale, I’m trying to think of her first name. The nightingale was the nurse?

Q. Florence.

A. Florence! Florence Nightingale, yeah. My mother was basically the one that, who could, uh, we could probably get over on my mother but not my father. He was the one who, uh, he was the one with the iron first. If we did anything wrong my mother would let us know that she’ll let, uh, daddy know about it when he gets home from work. Uh, both of my parents, uh, in my judgment, were extremely bright but neither of them, uh, finished high school. Uh, my father came out of school during the time when many students, uh, left public education at the end of eighth grade. Uh, whereas my mother, uh, she went to Frankfurt High School and uh, but just prior to, uh, uh, graduating; that would be her senior year, she was married and never finished, uh, never finished. Uh, back in those days often times if you were with child in a school; it was time for you to leave school. (Laughs) And, uh, the, uh, but interestingly enough, both of them were readers. And they brought that into the household; brought that into the clan, the importance of having books around. Uh, my, uh, my mother was, uh, what you would call a child prodigy as relates to music. And she would go from, uh, church to church performing and uh, the uh, she took up that craft, uh, or that skill, uh, late in the, uh, marriage. I guess she was about 35, 36 before, uh, she was a nursery school aide who was transformed into the nursery music teacher because the, uh, director saw; was able to identify those skills. And for, uh, a number of years, she came to Temple University taking courses, uh, that were aligned with, uh, early childhood education and uh, so she, uh ended her career, uh, over at Swarthmore College working in their early childhood program as the music teacher. Uh, my father was a postal worker, who uh, as I said before; well read, spent a lot of time in the library, uh, towards his free time. And he was also an artist. Uh, in act, that’s one of the skills you find in about four of the children who are artistically inclined. And uh, so he was what you would call, uh, fine arts was his avocation. And, uh, for years, uh, he spent a lot of time in the basement producing a number of works that, uh, that merited him being, uh, being given an exhibit at the, uh, at the Art Alliance at over at Broad, I think Broad and Arch. Uh, the, uh, uh, my father, uh, was a... a lot of people gravitated to him because he was bright; he was very smart in fact. I remember a number of college graduates coming to my house, uh, to be apart of that. They had a social, uh,

uh, set that came together for libation as well as meaningful dialogue. (Laughs) And he was basically at the center of that core. Uh, he, uh, was also a very religious person who, uh, who had trouble with that we call organized religion. Uh, in fact, he was a part of a group that actually established a church; small church. It sat about a hundred members but he was always one who conducted the household with strong religious principles. In spite of the fact in his act of involvement; his leadership of the church, he decided that was just something he didn’t want to be a part of. Uh, I guess that’s about the long and the short of it in terms of, uh, my parents.

11:07:03:13 – 11:07:53:11

Q. Dr. Edwards, did you have any experience with disability in your family growing up?

A. Yeah, my sister had Polio. Uh, the, I guess, that the, that certainly sensitized us to the fact the there’s some individuals that have to deal with disabilities in their life and my sister contracted Polio, I can’t give you the exact years, but I never remember my sister not having Polio which means that, uh, I certainly remember my sister from the time I was about six years old; at least five years old; five or six. And she had Polio so she was four years older than mine, me; which means that, which suggests, that she probably contracted the disease in her sixth or seventh year. Yeah.

11:07:53:11 – 11:09:02:09

Q. What was your sister’s name?

A. Sonya.

Q. And did your family make concessions or allowances for Sonya because of her…

A. None. Zero. (Laughs) In fact, in fact, I mean, we knew she had a bad leg but that’s all she had. Other than that, she was just like anybody else. She was expected to do the same things and uh, so interesting, as we were growing up, she would run and uh, as, uh, as much as that bad leg would allow her to run, dance and what have you so that, uh. While we knew that there was a handicap there, we didn’t allow that, uh to have any impact on how we related to her. In fact, me be the youngest there was more than a few times where she would just walk up and punch me right in my chest. (Laughs) I guess that’s all a part of the big, the older sister, uh, having to dominate the younger, the younger sibling, you know but that went on until I was about 12 or 13 and I put a stop to all that. (Laughs)

11:09:02:09 – 11:10:37:16

Q. You said she liked to dance, did she teach you to dance?

A. Yeah that’s an interesting story. The, uh, I guess I was about 12, no maybe 11, 11 or 12 and uh my two sisters, uh, wanted to, uh, dance, but they wanted to have a boy to dance with. So

they used to draft me. I’d be out in the street playing and they’d drag me into the house. “Come on, we want you to dance, we want you to dance, want you to dance with us” Uh, actually what they really were trying out their steps, you know, but in the process, I learned how to dance. So there was a pay off because when I went to junior high school. Uh I was one of the better dances in my junior high school. I forgot to mention, I did have an older sister, my older sister died of tuberculosis. I was seven at the time so that would make her 16. Uh, she, uh, had to go away up, somewhere in upstate Pennsylvania and they were not able to capture the disease and as a result, she passed. So, uh, so when I speak of my older sister, it’s really the sister that was really with me for many, many years as opposed to the, uh, literal older sister in the family.

11:10:37:16 – 11:11:25;24

Q. You mentioned that your family didn’t make any concessions for Sonya because of her disability. Did any friends or neighborhood people in the community treat her differently or you differently by proxy?

A. Never noticed it, never noticed it and I think its because, uh, Sonya would not allow anybody to, as she got older, she would not allow anyone to treat her in any way other than the rest of the folks. And I used to see her interact with her girlfriends, you never got a sense of “Oh Sonya has Polio so we’re gonna do X Y Z” Didn’t happened. Uh, she was, uh, a much a part of the gang as any of the other, uh, girls in her group. So, no, no that’s… it didn’t happen.

Chapter 2: Dr. Edwards as a Student | Professional Aspirations

11:11:25:24 – 11:13:26:26

Q. Dr. Edwards, when we spoke before, you talked about, um, one of your first experiences, really seeing how people with intellectual disabilities were treated. Um, you mentioned working for the department of welfare and some training you had done at Byberry and I was wondered if you could tell me a little about, um, that experience; that first time you really did see, um, how people with intellectual disabilities…

A. Well actually the, when I spoke with you last, my first exposure to large number of disabled individuals was a cerebral palsy group that came to Temple University. I was a lifeguard at that time and on Saturday mornings, the group would come in and I would have a chance to work with them. So that was my first exposure. That was a very positive, very pleasant experience to see the care, the tenderness of the aides who came with them and supported them as they tried to adjust to the water, the water situation, swimming situation. That was positive and the next, uh, large exposure to the disabled was when through a training program, we had to visit certain facilities and Byberry was one of them and uh, I was appalled with watt I saw. The, uh, it was almost as if I was going to a zoo, the way individuals certain areas were behind the cages and um, you know, just looking out as us and uh, you got no sense of, uh, any kind of normal

interaction taken place with the, uh, with the patients. Uh, if it happened, then I just didn’t see that, uh, but I left Byberry with a very, very negative experience with intuitional life for the disabled.

11:13:26:26 – 11:17:21:26

Q. Thank you. As a young man what were your professional aspirations? What did you want to be when you grew up?

A. (Laughs) Well you know its interesting you would raise that question. I remember a friend of my father asked me, uh, what do you want to do when you graduate from high school? What do you want to study? I said I want to be a dentist. And he looked at me, a dentist? These guys, these were college graduates. A dentist? Why do you want to be a dentist? I don’t know why I want to be a dentist (Laughs) I just thought that was something I needed to say at the time, you know. But then I began to zero in, uh, maybe that’s not such a bad idea to become a dentist and, uh, so I began to pursue sciences as I went into my undergraduate years as a bio major; a chem. minor. Um, I spent, uh, my years at two colleges. I started at Virginia Union, and uh transferred into Temple as what you would call a rising sophomore. Uh, they gave me a number of credits. I think I came to the university with about 60-63 credits and they gave me 40 of them so that wasn’t a bad deal. Uh, so I brought some good grades out of Virginia Union. So as I began to pursue my quest as becoming a dentist, the uh, it was a lot more difficult here at Temple than I had anticipated in that, I, uh, I’ll give you an example; one professor would, uh, assign 90 pages to you. I’ll never forget his style-ogy, 90 pages, and they had open recitations which meant that when you came to class, the next Wednesday or Thursday, whatever day that was, you could be called on and you were expected to, uh to respond to questions that he would raise about those 90 pages. That was tough! It was tough so that the expectations in my judgment from the professorial prospective were high but at the same time, uh, I had difficulty grasping so much material in just a weeks time because at the same token, I had calculus; I had history and I had cat anatomy and some of my colleagues say you should never take history with cat anatomy in the same semester. Well what did I know? I’m a transfer student. Well to make a long story short, I used to tell everyone my 81, from 79 to 81, 82 came directly from this brain. Whereas there were guys who had old exams who, that we had to compete against, and uh what happened is that if you have an old exam and you cant get a high B or low A you had no business being a science major in the first place, you see. But it was just when it came time to, uh, get into the professional school; you know dental school or medical school, my grades just weren’t enough. That C, that 2.4 to 2.5 just didn’t cut it. Uh, now what I could have done, I could have gone and got a Masters in a Biology or Chemistry related area and I could have upped the ante for getting into medical school but by that time I was married and, uh, had a child so that was just, that was put on the back burned; not the back burner, I took it off the stove. (Laughs)

11:17:21:26 – 11:18:51:08

Q. You mentioned that you were married. When did you meet your wife?

A. Actually, uh, I met my wife as an undergrad at Virginia Union and uh, the, uh, uh, I transferred for the reason that I thought that I’d have a better shot of getting into dental school uh, or medical school by coming out of Temple. And it just turned out that I was just wrong, wrong, wrong; because where I faired with the group at Virginia Union, I was like number 4 or 5 position in terms of science majors so I could have gotten into Howard or Harry. Uh, but the, uh, but it just didn’t work out for me. But anyhow, I transferred out of Virginia Union. We kept our relationship going and by the time, uh, I had almost finished school in 59, we got married. I had to take, uh, a year of Physics and a year of German, That’s what happens when you transfer, you get stuff all messed up in the terms of how you take courses. My last year of college, I had something like, uh, seven semester hours the first semester; seven semester hours the second semester. So Physics and uh, German; Physics and German so that’s crazy, that’s the way it worked, yeah. Okay.

11:19:11:06 – 11:24:52:25

Q. Thanks. Um, Dr. Edwards, I believe you also served in the Army?

A. Yes.

Q. Can you tell me a little bit about that?

Um, that was, uh, that was an experience in that, uh, I was what you call, a, uh, a reservist. A reservist goes to work, goes into service for six months. And uh, that was serious training for the first, uh, 16 weeks. And then, uh, I guess by the time I was in the tenth week, we had tryouts for the, uh, regimen basketball team and uh, of course I made the team. And uh, you heard I said of course I made the team and uh, as a result, I went into what you call special service. Which meant that, uh, you had to get up with the troops in the morning but at eleven o’clock your day was gone because then you went over to the gym to practice your basketball craft so uh, that was, uh, a joke. You know, I was serious the first, like I said, the first ten weeks, I was serious trying to learn a craft of being a combat engineer. But once they, I transformed into special service; I kind of forgot about being a soldier and just, just be a basketball player. And uh, so at the end of February, my six months were up so of course, I’m home now to work as a, continue my service as a reservist where you go to, uh, training, I think we went to training, was it once a month or I think, once a month, we had to go for two or three hours at 57th and uh, 57th and Chestnut, yeah. Uh, and I did that from February until August. And then they had the Berlin crisis, and the Cuban crisis so, uh, they called back all the reservists. Now that, I thought, now that was going to be real serious because, you know, you know, you hear the media, they’re talking about, are we going to have a nuclear war and all this kind of stuff. We have to send troops to Germany and uh we may have to send troops to Cuba. I’m saying geez, why did I join the reserves to get caught up in this stuff because by the time that happened, if you were married with a child, you didn’t have to go. You didn’t have to go to

service because things had changed. You see, but people who were already in it, you’re stuck. You were stuck, but that turned out to be, uh, that was almost a picnic in terms of they sent us to Ft Bragg, North Carolina. And uh, we had a, we must have had ten lawyers in our company. These are enlisted men who were reservists who were called back to duty. We must have had ten and these guys would question everything. (Laughs) We were the beneficiary of it, you see. I remember one, I’ll never forget this, they said at four o’clock on Friday it is our right to practice our Sabbath. Well, they were right so the Adjutant General said, uh, they’re absolutely right. So they will have no duties at 4 pm through Saturday. Well the rest of us are saying, wait a minute, if these guys aren’t doing anything, we’re not going to do anything! And if we did do something, we were going to do it in a lackadaisical fashion. Knew nothing about cooking but they wanted to know who wants to work in the mess hall? Well my cousins told me, they said listen, if you ever have a chance, these are cousins who’d been in the service, if you ever have a chance to work in the kitchen, you work in the in the kitchen! So I raised my hand, I’d like to work in the kitchen and it was a tremendous pay off because the people who worked in the kitchen, they would take food out to the field and then come back. Didn’t have to stay overnight, you see, in the field.

Chapter Three: Birth of Graynle, Jr.

11:24:52:25 – 11:25:50:07

Q. But you said life wasn’t bad actually it became a little better. You became a dad while you were on active duty.

A. Absolutely. Now that part I didn’t like. Uh, but since I had no control because I tried. I tried to get a deferment with the congressman and uh, they wouldn’t allow me to get one. So I had to sort of live with the situation that I was in. It reminds me of some of the inmates that we use to see in the prisons. Uh, they looked like they were having a good time. Well some would say well wait a minute they’re stuck there so they’re making the best of whatever situation they’re in. Well that was us in the service. We didn’t want to be there so we tried to make the best of the situation and as I said early, god bless the lawyers in our company because they kept our superiors honest at all times. (Laughs)

11:25:50:07 – 11:26:35:12

Q. And tell me about your son, when was he born?

A. Uh, he was born two weeks before I had to leave. In other words, I was, I was called to active duty and stayed in the city for almost a month. And then, uh, around the 20th of October… 21st of October or so; it wasn’t even about ten days then I had to leave, uh with the company. And that was not a good time, it really wasn’t. Uh, but, it was something I had no control over. To go

AWOL could have created some real problems, you know.

11:26:35:12 – 11:29:09:25

Q. Was it immediately evident to you that Graynle Junior had a disability?

A. Yeah, I think it was. What happened was one of the nurses; I don’t know whether it was her attempt to console me because, uh, my wife was not there when she said this. I don’t know whether it was her attempt to console me or make me aware of things to come, but I don’t remember her exact words but what she did say suggested to me that Graynle would have some problems, uh, later on in life. And, uh, I guess the first thing that came to my mind was my exposure to this cerebral palsy kids that I had worked with as a lifeguard at Temple. Uh, and uh, of course, as he, uh, became older, you could see that the classic developmental stages that you would expect a child to go through; he wasn’t going through them. So it was a kind of confirmation of that that nurse had shared with me earlier. Uh, today if that same thing had happened, uh, it was a classic case of negligence in my judgment, I would have gone right to an attorney because of the, he was born with a Hylan Membrane and allowed to sit in a regular crib as opposed to being placed under in an incubator immediately and monitored on the basis of that situation. Uh, but it wasn’t until he, uh, he, uh, contracted a fever and uh, we know just a little bit about biology when, uh, young tissues are exposed to high, young tissues are exposed to high temperatures, damage occurs, you see. Those electrical impulses you see that normally take place don’t, and as a result the certain portion of the brain becomes damaged and, uh, I think that’s what, I think that’s what happened to Graynle, yeah.

11:29:09:25 – 11:31:09:28

Q. As you were discovering Graynle’s disability, did the professionals, doctors, nurses, what have you offer you any advice or support; you or your wife?

A. Well not… I don’t really recall a whole lot of support other than the fact that he was, he would go to, we would take him to the Pennsylvania hospital on 8th and Spruce. And uh they would basically take him through certain, um, profunctionary testing and what have you and uh, basically come up with little or nothing about oh this is what it is, this is where he is. We’ll keep monitoring; bring him back in six months, la la la la la. And I remember the last time we went, Graynle was about two and a half to three years old and he was, we were in a clinic type situation. There were a number of babies there and, uh, again it was kind of routine, uh, consultation with the physician but no specific, uh, instructions on what we should be doing. Uh, I think primarily because a lot of the the physicians at that time didn’t know what to do. You see, we’ve come a long ways, you know, in dealing with, uh, different kinds of intellectual disabilities. We’ve come a long, long way and uh, I think there focus was, uh, making sure that we did all that we could that they could do to make sure that he would be healthy, you see, as opposed to neurological development. I don’t recall any of that happening.

11:31:25:02 – 11:32:33:08

Q. Doctor Edwards, I was going to ask if Graynle Junior’s disability was something you and your wife had a hard time coming to terms with.

A. The, uh, I think she had a harder time than myself. Uh, primarily because, knowing the kind of neurological kinds of damage that can occur when one experiences high fever at a very young age, uh, I think I accepted it. Didn’t like it, but I accepted it. Uh, I think she had a more difficult time. Uh, the, uh, because I know as Graynle was going through three and four years of age, the kind of invites that three and four year old children get, he wasn’t getting. And I know that had a traumatic impact on her in retrospect, you know.

11:32:33:08 – 11:35:26:18

Q. Tell me a little more about you say invites; I’m assuming you mean to birthday parties and play dates, those kinds of things. Was the community accepting of your son?

A. I don’t think the community really interacted with my son at that age. Uh, the, his community was my sister’s house, uh, and his, uh, his (inaudible) who lived in Richmond, Virginia. But his immediately community was basically his home and his sister’s house; I mean my sister’s house, who was extremely, extremely, loving to Graynle. Uh, but I recall one experience that, uh, my wife had with one of those parties for three or four years old. Graynle had shoes on and one lady, totally insensitive, said uh, why does he have shoes? He can’t walk. That just wiped her out, you know, how do you say something like that? That’s just so ignorant, uh, but anyhow I know that bothered her big time because she even told me about it, you know. The, uh, so when you talk about acceptance, uh, I think what, acceptance might be, might not be the right word. Uh, the isolation is, might be a better word. You fee a sense of being isolated, uh because you weren’t getting the kind of invites. People aren’t reacting to your child “oh, he’s so cute de de de” You don’t get any of that. In fact, I remember, my roommate, we went down to Richmond and my son was in a little carriage. And, uh, he looked at my son like my son was ET or somebody, you know, somebody from outer space, you know. I never said anything to him about that but I’ll never forget that look that he gave. So that’s the, as opposed to accepting, the isolation is, or rejection, was a strong emotion that I would voice. Um, yeah.

11:35:26:18 – 11:36:26:24

Q. Was that particularly evident in your relationships with your male friends, do you think?

A. Uh, well some of my male friends, I have had some friends for many, many years. Some, uh, had no problem with Graynle. Others just moved away, you know with little or no connection. And, uh, the, what’s interesting that as a personality, he’s always been a fun guy, you follow me? So acceptance, that’s what I said, acceptance was not the word that comes to my mind. It was more of an isolation that, uh, that uh, that I experienced.

11:36:26:24 – 11:39:48:17

Q. You do talk about your sister, Sonya and her close relationship…

A. Oh man, she was a gem. The, uh, I think Sonya, oh one question please, was the one who allowed me to see my son not through the lens of his disabilities but through the lens of the loveable, jovial person that he was. So, uh, so we used the word acceptance. I think, as it relates to my sister, I was able to spend more time relating to my son as a normal person as opposed to disability because that’s how my sister related to him. It was, it was not, uh, rare that my sister would say something to my son “If you do that again, I’m going to knock you right in your head!” (Laughs) Of course, my son would laugh, you know because he knew he wasn’t going to het knocked in the head but that’s the way she treated him. She treated him just like she treated her children. That was the other part of it; he grew up with her children. They, uh, Graynle’s, um, relationship with people was a lot stronger in my sister’s house than in my own house because kids all up and down the block knew Graynle. And he would be on the porch and they would come by, Hi Fool, Hi Fool. We learned to see that many, many times and that’s because of my sister, you know. She would call kids up on the porch to be like “Listen, this is my nephew, this is little Graynle.” And because of the way she treated them, they treated my son the same way. He was just one of the kids, you know, in the block. And, uh, he used to spend a lot of time at my sister’s house. Especially when, uh, when I was doing my graduate studies and uh, it was not unusual for him to, for her to pick him up from his little workshop on Friday and he would stay there until Sunday afternoon. And uh, they, uh, my sister was a gem. Yeah. No question about it. Yeah.

11:39:48:17 – 11:40:23:13

Q. I just have to ask, because you mentioned “Foo” Who or what is “Foo”?

A. That’s his nickname. Little Graynle is “Foo” and my sister’s children decided they were going to romanticize his name and they called him “Le Foo” (Laughs) He became “Le Foo”

Chapter Four: Graynle Jr.’s Educational Experience

11:40:23:13 – 11:40:42:10

Q. Um, Dr. Edwards, I’m going to ask you a little about Graynle’s early school experience; Graynle Junior’s school experience. I know, um, when he was young, professionally you were already teaching. Yes, you were a high school Biology teacher? Would that be right?

A. Yeah, Biology teacher.

Q. At Gratz?

A. Gratz High School.

11:40:42:10 – 11:47:55:27

Q. Gratz High school, okay. Um, so when Graynle Junior was six, you enrolled him in school just like other kids. How did that experience…

A. Yeah, that didn’t work out at all; didn’t work out well at all. The, uh, I remember taking him to, uh, to the school. Uh, and in fact, the, it was the Park, uh, organization that had a, uh, um, I guess socialization for him when he was four and five years of age. But when he became six, he was of school age so you take him to the school. And uh, I guess around one o’clock, I got a call, uh, we can’t service your son. We can’t service him. Oh? So we had to take him out because at that time when someone says, that was (inaudible) to an expulsion. The school’s expelling your child. Not knowing what to do, you take him out, you see. That’s when I said earlier, that PArc came to the rescue so uh, he spent another year, he had been to PArc and he went back to PArc. So he spent another year there and that’s when, uh, the right education law was passed. Uh, the, um, and that’s when we took him back to that school and uh, I’m sorry took him back to another school. The first school was Hanes Street or High Street but the second school was a Joseph E Hill School. And uh, that was a program designed for special needs children and uh, it was clear to me while they, he was entitled to be there, the services weren’t there. So, uh, we put him in the Woods School, the day program. Now that was a chore, long way out there to Salem. I forgot (Laugh) which one it was but anyhow, very expensive. So we, uh, petitioned the school district to have a hearing and have them pay for those service because it was clear the Joseph E Hills staff was not prepared to service him. The law said they had to service him but the talent, the skills were just not there. That’s why I went out to the Woods. Stayed there almost a year and one of the, uh, social workers, came to us and said listen, of course this was off the record, for the kind of money you’re spending and for what he’s receiving, you need to take him out of here. Back to the Joseph E Hills School because what we were finding was that there were a number of folks in the business who jut didn’t have the skills to service the intellectual disabled person; just didn’t have it. So um, because of the legal mandates, skill development began to occur, okay, but they had a situation where the law exceeded the skills that were required and often times that’s what has to happen. Before you get to the skills development you have to have a law that entitles the person to receive certain services, but anyhow he went back to the Joseph E Hills School. This ain’t about the Joseph E Hills School. It was that there were two individuals that really gravitated to Graynle and um, gave him the kind of nurtures that you would want anybody to have who was in a school situation. And one of them, Van Hardy, she was so good at working with Graynle. And there were times when she would take Graynle home with her from school and when I came from school, I would pick him up and take him, you know, take him home. In other words, I would leave Norristown around, lets say, 3:30, quarter to 4 and I would be at Van’s house by 4:30. And uh, so he had a very strong positive relationship with her for a long period of time. And Van was what we called the classroom aide, but his classroom teacher, you know I cant remember her name but she was a

wonderful person and he was at the Joseph E Hill School for a number of years but a group of parents, uh, got together and said wait a minute, while we appreciate what the Hill people are trying to do, they don’t have the facility that they need. And we were forced, that resulted, in them building the new Joseph E Hill School which sits behind Martin Luther King High School right off the Tulpehocken. Stenton and Tulpehocken. With all of the facilities, all of the services you would ever want. They had a, uh, physical therapist on the scene, on the site, all 24, not 24 but the full day. Same thing with speech therapy, they had a wonderful [pre-vocational] training center there. Uh, all of the necessary apparatus that you would want to see in a physical education class. Uh, I mean, they really did that right, but it was because of a number of parents saying listen, you’re going to have to do better for us than what you’re giving to us in the old Joseph E Hill School. And so it became a reality for about three years, two or three years and then this whole notion of, uh, restrictive placement came down the pike. Yes.

11:47:55:27 – 11:49:02:11

Q. Dr. Edwards, I’ll ask you about that in a minute but I’m very interested in what you were saying about this group of committed parents.

A. Yeah.

Q. Was this really the first time you considered yourself activated? Um, as a part of a movement?

A. An activist? I would think so. Yeah because the, up until that time, I can’t recall any deliberate actions on my part to change the system. The only activism that I was involved with was the trying to get the, uh, the state to pay for his education up at Woods School, but that was funny, we went to the hearing, I knew more about the situation than the lawyer that I paid to be there. You know, I ended up doing all the talking. I didn’t even need him. I didn’t even need this guy! (Laughs)

11:49:02:11 – 11:50:05:20

Q. We were talking about you becoming an activist around…

A. Oh yeah, yeah. That’s around the building of the construction of the Joseph E Hill School. That’s when I really got it. Yeah. And simultaneously, the City was under a federal mandate to upgrade its special education program and I was a part of the special Ed action committee. I had come down to the board just to speak on behalf of the marginal services that were being provided to children. (inaudible) and Maureen grabbed me and said Listen, we want you to come on our committee so I said ok. So that was my very first and then advocating for the Joseph E Hill’s new school was my second.

11:50:05:20 – 11:50:37:07

Q. What was it like in connecting with these parents? You mentioned two of them who are particularly powerful advocates, (inaudible) and Maureen. What was it like for you to connect with parents in this way?

A. It was easy because we all had a common cause, you know. The, uh, it’s amazing how people can come together when they have the same interest. That’s what it was all about. No adjustment whatsoever.

11:50:37:07 – 11:54:59:22

Q. Why did Graynle have to leave the Hill’s School eventually?

A. Because the, uh, lease restricted, uh placement. That was, had come down the pike and uh so now its time to implement that, uh, particular, statute. And uh, that meant that he had to leave the Joseph E Hill School and go to Germantown which was a joke. Those folks had not been, in any way, socialized, trained to service that population of children. Graynle ended up in a basement with little or no interaction with anybody other than his classroom and his classroom teacher. And uh, by this time, I guess I had run out of time for the time being, anyhow, but I knew he only had one more year and uh, so, uh, at the end of that year, in fact, it was Armstrong that enabled him to have that extra year. I said I’m done, you know. Any time, you have a mandate, a federal mandate, that’s impacted on your child, and it was a mandated self that allowed the child to have that experience, you see. So you got one thing going against the other. But again, here again, it’s a situation where the laws going to have to precede practice because as the integrated, uh, special needs with intellectual disabled into the so called regular schools, they became develop programs to embrace them and um, like I know, there, uh, Champion’s daughters, who are younger than Graynle, they went to their Germantown’s prom, you see. And uh, the students began to, uh, interact more with them because they saw them more often. You see there was a time when students very seldom saw the intellectual disabled child. They didn’t see them. So there was, when there’s a, when you’re not aware of something, it’s easy, its very easy to be, uh, frightened or, uh, maybe frightened is not the best word. Uh, maybe alienated from a certain group of people if you don’t know anything about them and since a lot of the intellectual disabled students also had physical deformities, they became, for many, many years, even centuries, the brunt of jokes and ridicule. So now you got these kids, you’re bringing these people into my school. So it took time for the adjustment to take place and that’s because if it was happening, there were people in that building who were marshalling that change because the kind of complaints that you heard in the late 70’s and 80’s, you don’t hear that about the interaction between the disabled and so called normal children. Uh, you hear more cries about the LD students being integrated into regular classes; teachers up in arms about that. In my judgment, I think they have a right because there’s no training. You put the kids in a room and oh, that person is LD, that person is LD. You do the best you can do them. That’s what happened to too many places. With a Special Ed support person maybe once a week. (Laughs)

Chpater Five: Impact of Disability on Relationships

11:54:59:22 – 11:56:44:09

Q. Dr. Edwards, you talked about, sort of, being tired of fighting when Graynle went to Germantown, temporarily. Temporarily tired of fighting, but people don’t often talk about the effects of disability, sort of, on familiar relationships on how that constant need for advocacy is exhausting and stressful and I wonder if you felt that in your own marriage and family?

A. Yeah, the, uh, the heated arguments about what to do about different kinds of situations and um, I think what happens is that, this is something that might require some sort of, uh, psychological inquiries. Often times you may repress, uh a situation and directing your anger at the person that’s creating the problem. And you act out that stress on someone else. And I think that’s what happened in our marriage, you know. Uh, the, uh, the unable to come to reasonable conclusions about how to deal with certain situations and uh, it just happens too often until you think that the only relief is to just part company and do the best you can for the child. Uh, that’s the best explanation that I can come up with. I don’t know how accurate it is but that’s my prospective.

11:56:44:09 – 11:57:44:06

Q. How did Graynle adjust to the fact that his parents had divorced?

A. I really don’t know. I really don’t know because while the divorce took place, uh, I never lost contact with Graynle. I mean, I see Graynle four to five times a week. Uh, not just seeing him but taking him home, feeding him, putting him to bed, and what have you. So its, I mean it could be, that your dad’s a fireman, for three days you don’t see him now, he’s back, his three day stint is over, he’s back home again, you know. It’s not quite that simple but the, uh, he, uh, Graynle has never been away from his parents, never.

11:57:44:06 – 11:58:07:05

Q. You know we all have a vision for our life and then our children change that vision in many ways.

A. Mmm Hmm.

Q. Um, certainly, when someone has a child with disability –

A. Mmm Hmm.

Q. -- that vision changes in ways that no one can really anticipate.

A. Yeah.

11:58:07:05 – 12:02:20:29Q. I guess my question is how do you come to a place of acceptance when you realize the life you envisioned is incredibly different from the life you have?

A. Well. Uh, I think that I’m fortunate. I’m really fortunate because professionally I’ve been able to reach some heights I never really thought about when I was in my early 20’s, you know. What was important to me was my jump shot and basketball and um, being able to make a decent living. That was it. It wasn’t until I was 29 that I decided to pursue, uh, academic credentials. Master’s and a Doctorate and uh, I blame that, I shouldn’t blame it… that was a result of my interaction with Marcus Foster who was a celebrated educator here in Philadelphia area who went to San Francisco and was murdered by the Symbionese Liberation Army. You know the Patty Heart situation? Well, her group. Um, he insisted that ID’s be worn in schools by everybody and there was a faction out there that infiltrated the school with drugs and all kinds of stuff. And uh, the price he had to pay was being murdered. In fact, he was murdered. His colleague, I mean his assistant was shot pretty badly but he survived. But he was the one, I saw in him a person that I would like to emulate. And in fact, he’s, I had left teaching because I had decided I was going to be this big shot Economist, okay? And uh, I started graduate school here at Temple. I had taken two courses and I went back to see him during the summer and he said you know we need guys like you back here in education. I saw it too. That’s when I went back and decided to start on my graduate studies and uh, so. I don’t think, as I said, I think that I was fortunate because when I made a conscious effort about what I really wanted to do, once I think in the dental school, and I had put that on the back burner. I took that off the stove and didn’t even think about it anymore. Once I decided what I wanted to do, I started to realize it. And I blame a lot… blame? I credit my sister with most of that because there are times when, instead of me picking up Graynle at four o’clock, four-thirty coming in from Norristown, I would pick up Graynle at 7:30. He had already been fed and all I had to do was get him home, we’d watch a little basketball if a game was on. Put him to bed, get him up in the morning, get him out to, uh, to the workshop. Uh, so uh, yeah, I credit a good bit of that to my sister. She allowed me to pursue my dream and uh, that was... that decision was made forty years ago, yeah.

12:02:20:29 – 12:05:47:24

Q. Do you think there’s a need to, kind of, um, council and nurture young parents who, um, have a child with a disability and the road ahead is uncertain for them?

A. You know, it’s the service they need is there. Uh, but I can just say to you that from my prospective, uh, I just don’t have time because Graynle was still apart of care giving. I mean a big part of it. I do my, I do the things I do, the way that I can be of service is uh, I’m on the state affiliation of the disability rights network. I’m on their board. So that’s one way I advocate. Another way I advocate is, uh in my teaching. I make it a point to deal with, uh, special

education situations that are germane to whatever topics I’m dealing with, but directly interacting with young parents; there’s a need to do that,. What I think is happening though is that a number of young parents have so many services today that we never even thought of having, you see. Uh, you have services that pick up a child from birth today, you see, that didn’t occur 40 years ago, 50 years ago; just wasn’t there. We find that its not as easy, this has been my experience in terms of just talking with some of my colleagues who’ve been in the fight a long time. Uh, they have difficultly getting parents to get involved, you see. Uh, but the need is certainly there because things can change. Uh, take the waiting list; the waiting list is something that a number of people are involved in, but for the parents who are receiving these services, a lot of them are not involved at all. And they may have the same reason that I had. Listen, I’m a caregiver in the house, so it’s kind of tough to be out there, you know, fighting those kinds of supports, taking on parents. I think the need is there, uh, for certain the need is there for those parents who aren’t getting any support because they are the waiting list; I think it’s in the neighborhood of 13,000. Okay, yeah so. I’d like to see it happen, just that I’m just not apart of that. Yeah.

12:05:47:24 – 12:08:21:06

Q. You had talked about earlier, um when Graynle Junior was very little, three or four; the invitations not coming to parties and all of that. Um, and the feelings of isolation; I think you’re right; isolation is the right word to use. Um, has that changed now for Graynle?

A. Um, in some respects, it has changed, uh, the, he’s now involved in a lot of, uh, activities that are, uh, originated by the service agencies. Um, the, and at often times he’s interacting with other intellectually disabled citizens. Um, he goes out to the jazz performances on Monday nights periodically with his mother. Uh, he’s not there the entire time because I usually pick him up, uh, somewhere in the neighborhood of 6:30-7 o’clock. He attends all kinds of sporting events. Uh, he went out to, he saw, uh, I think it was, uh, it was the St Louis. But he, two weeks ago he was at a basketball game at Temple University. But these are activities that I’m initiating or his mother is initiating or the intellectual disability community are imitating. Uh, he’s going to family houses in Washington DC, North Carolina, New York, but again being initiated by parents in that regard. Uh, so there’s still a bit of isolation in terms of what you would call the normal population saying Graynle, come on in, be a part of this. That’s not happening. No.

Visionary Voices Interview: GRAYNLE EDWARDS, PhD MARCH 8, 2013Part Two

13:58:10:06 – 13:58:43:07Q: And my name is Lisa Sonneborn. I’m interviewing Dr. Graynle Edwards on March 8th, 2013 at Temple University in Philadelphia. And also present is Stephen Crout our videographer. And Dr. Edwards, do I have your permission to continue with our interview?

A: You may.

Chapter Six: Graynle Jr’s Education and Impact of Least Restrictive Environment

Q: Thank you. (Pause). Dr. Edwards, we ended our last conversation with – talking about the Joseph Hill School.

13:58:43:07 – 14:06:20:16

Q: How was Graynle Jr.’s experience at the Joseph Hill School?

A: Well I thought it was a really great experience because that was the first time that he had an opportunity to interact with the same group of people, uh, on a daily basis. Uh, that is both the student body as well as the teachers and support staff. Uh, the other great thing about that was the, uh – they did a lot of looping. He had the same teacher for about two and a half to three years. Uh, I can’t think of her name right now, but the aid was a person who really embraced Graynle – Van Hardy was her name. And, uh, she embraced him to the extent that at the end of the day he would go home with her. And when I left school I would go by the house and pick him up. And her son Steven – they were almost like brothers in terms of the way that he connected with Graynle. And, uh, Graynle… They did not hold back at all in terms of expectations for Graynle, and as a result, Graynle really grew. I haven’t had an opportunity to interact with that family of Van and Steven – Stevie we would call him. Uh, so that was a very positive part about the Hill program. I think the negative part about the program was that the overall instructional… uh, the overall instructional program did not – was not as sophisticated as it could have been in terms of not just the curriculum but the kind of supports you’d expect to see – the artifacts that you’d hope to see in that kind of setting. They just weren’t there. And I began to grow in terms of what could be because I became a principle of a school that services a significant number of intellectually disabled students. So I saw what could be. And Nick Protunda – I’ll never forget him – he was my unofficial supervisor at that school and we had the chance to interact with each other and I had a chance to learn from him. In fact, he’s well aware of the fact that my success at that high school as it related to my special needs population was directly attributed to the kind of support and information that he would give me – on-going kind of support. So, I took some of that information under advisement and began to think about how Joseph East Hill School could change. And we began to meet with parents because the Hill School was really an old building. Uh, there’s a need for a new building. And a number of parents and myself got together, we met periodically, and over the course of two and a half to three years, we were instrumental in getting a brand new building built right behind King High School off of Stanton Avenue. Um, so I’m making a leap now – I’m going from the old J.E. Hill School to the new school. Uh, now that had everything that you would want. Support staff, the kinds of instructional, uh, the kind of artifacts that you would want students to have. They had an outstanding prevoc—uh, prevocational program with a teacher, uh, who worked very

closely with Graynle. And you could see how his manipulative kinds of skills – dexterity and what have you – began to grow as a result of his experience in the new Hill School. And in fact he used to bring homework, uh, well they would put homework in his bag and I would work with him in terms of “Graynle, you gotta do this.” And, oh man, that was painful because after about five minutes he didn’t want to do anything okay. But in school he was a pretty good worker in school. But his problem was he couldn’t sustain himself for long periods of time. In fact they used the term “prompt.” In other words, with a “prompt” Graynle would perform the task, but if you didn’t give him the prompt, he wouldn’t do anything. So his instructional program was “prompt” laden. But he would perform. He would perform and after, uh… When I mentioned support staff, they had a social worker there, they had a physical therapist there, uh, they had a guidance counselor there. They had everything that you as well as the, uh, the different kinds of rails and things for students to, uh, ambulate throughout the building. Uh, the, uh – it was just everything that you would want to see. And, uh, under the, uh, egis of least restrictive placement they decided to dismantle a significant part of the program and sent the older students to regular high schools. Some to Olney. My son was dispatched over to Germantown High School. And of course we fought that, but he was in his last year when that occurred. So, the, uh, I guess you might say that the, uh, the fight was kind of gone out of us after so many different kinds of battles. So, let him do his last year at, uh, Germantown High. And, uh, unfortunately they were not prepared to service that population. They had a room in the basement. From the least restrictive placement, they’ll put him in the basement somewhere. Okay. Uh, it was really an outrage to be honest. But as I said before, uh, by the time we really began to think about the prospects of what could happen, we knew it would be for such a short period of time. So we just kind of washed our hands until he finished his last year. In fact he went to Germantown under Armstrong because that was the extended year that he was entitled to. And, uh, and then he left the system – public school system. Now if you have anything specifically – anything specific you’d like me to respond to as relates to Joey – Joseph E Hill School then… let me hear you.

14:06:20:15 – 14:07:01:27

Q: Well the one thing I want to ask is what year Graynle went to Germantown.

A: Uh, boy, he was in his 21st year. So that would be… that would had to have been 1981-82 school year. Yeah… Except that... it might have been the 82-83. It was one of those years.

14:07:01:27 – 14:13:08:16

Q: Could you tell me a little more about the concept of the least restrictive environment and how that played out in the school?

A: Well the thing is, uh, it was happening all over the Philadelphia school system and other places as well so that was just not unique to the Philadelphia schools. It was a mandate I think at the federal level where you had students in isolation in buildings. I remember my high school that I ran up in New Brunswick, uh, they had special education on the doors. Can you imagine

that? On the doors in big bold print – “Special Education Classrooms.” And what was happening was that kids were being isolated who should not have been. Uh, you had situations where you had, uh, children who might have been learning disabled, uh, were treated a lot differently than regular ed students in terms of either being placed in Resource Room programs, uh, where they spent too much time in the Resource Room or the, uh… when you had the, uh… when you went to the, uh… special art, gym – things of that sort. Too often they had art for special needs. Uh, the, uh, the kind of instructions, uh, instruction that took place because teachers weren’t trained properly – it made it too often students had to go to the special needs teacher for math, science, and English. And the fact of the matter is while a student may have been deficient in one content area, they could perform quite well in others. I’ll give you an example – social studies. Uh, the, uh, there is no reason why a good number of special needs students could not function in a special—in a social studies classroom given the proper program, you see. But again we’re talking about training of the teachers. So we’re talking about, uh, uh, uh the need to implement a, uh, least restrictive placement on one hand, but not training the teachers on the other hand. You see, so, uh, that was a real problem. And oft—too often those special needs students were not accorded the same kinds of opportunities as the regular ed students. I think I gave you an example of the, uh, of the, uh, students, uh… teachers coming to me asking if their students could go on the senior trip. And, uh, my first reaction was: “Why not? Why not?” “Well in the other school they wouldn’t allow us to do so.” I said: “Nah, no, no, no. You get the parents’ permission for their children to go on the senior trip and they will go. It was really a no brainer. You see, but yet I’m almost certain that my sensitivity to this whole situation as probably influenced by the fact that I had a special needs child. Uh, and too often, uh, that is not the case. You have administrators who are almost oblivious to the needs of special needs children and see them as a kind of problem as opposed to an opportunity to serve, you see. And, uh… So. So that whole business of separate but equal was something that was born of lack of opportunities that special needs students were entitled to and that weren’t given to them. So when they started moving kids to expand those opportunities they were moving them into places where the staff was not prepared to service them. See, THAT was the problem. You see, and it’s a problem even today. You see, the, uh, I guess all of the special needs instruction across the universities of America probably want to castigate me. The, uh, some of these poor folks who would come out of special needs… Teachers aren’t well trained. You see, and maybe their response would be “we don’t have enough time to train them the way that they should be trained.” And there’s probably something legitimate about that. You see, there’s probably something very legitimate, but we don’t… (clears throat)… the course work is such that you have the general education and it’s very difficult to get all of that in in a four-year collegiate program, so I’m not gonna make excuses. I’m just talking about the facts. Some folks who have special needs potentially… I just need to back off of that because you see the same thing among administrators, general education teachers, uh, just haven’t been trained well. In fact, that’s the major, uh… from the federal perspective this whole notion of quality instructions – quality education programs for our teachers needs to be upgraded.

14:13:08:16 – 14:15:08:10

Q: So let me take you back Doctor to the time when Graynle was in Germantown--

A: Mm-hmm.

Q: --when he was going through high school and public school system. Did you feel that teachers were unwilling to be trained or did teachers actually have the desire to have more training and more competent surroundings?

A: Oh I think it’s no question about teachers wanting the training. No question about that. The problem was finding time and money to do it. You know it’s amazing the way you can maneuver to get – to squeeze out what I call “job-embedded instructional activities.” Or “job-embedded training.” The, uh… sometimes you can shift a number of students just a half a day one day. Just one day. And you might do that twice a month to free up X number of teachers to go for training. And you might do it in such a way that in year one we’re going to target this group of teachers. And year two – this group of teachers. Then you have a lot of turn key going on. So you’re building capacity to service the lion’s share of the students in a relatively short period of time. But often time we don’t do the training because, uh, we don’t have the time or the money. Not the time nor the money. And, uh, you know, I’ve been a principal long enough and had enough experience to know that you can squeeze out time. There are ways of doing it. It’s just a matter of, uh, people in charge taking the initiative to make those things happen. It can happen. Yeah.

14:15:08:10 – 14:15:31:22

Chapter Seven: Joining a Community of Advocates

14:15:31:22 – 14:17:39:05

Q: When you were talking just a minute ago about Graynle’s experience in Germantown, you said that you and your wife sort of gave up the fight. There had been too many battles, sort of, fought over the years—

Q: Why were you feeling so battle weary at that point?

A: Well you know they uh…. You know, raising a special needs child, you know, it’s… it can be kind of demanding. Okay, and so that has to happen regardless of what services have taken place outside the home. That’s a given. Uh, but when you take into consideration the different meetings that you’ve been to, the different battles that you had to fight and given the fact that I said before, by the time I figured (out what was actually going on in Germantown High School, I, uh, I said “Well he only has a few more months. The hell with it. You know, let’s… let’s just wrap it up.” And then, of course, shortly afterwards, I got into another battle with the whole community collaborative initiative with the closing of Byberry and Pennhurst. And that’s when I came in contact with uh… uh, uh… oh my God, I can’t believe I’m struggling with her name. Not Michelle, uh… the secretary of—

Q: Estelle?

A: Estelle Richmond. Yes, yes. Very impressed with her from the beginning. Very impressed. And, uh, so the, uh… I’d gotten to the battle again, you know, uh…

14:17:39:05 – 14:20:10:06

Q: Tell me what that battle was. I don’t think we’ve talked about that before. What was the battle and what was your experience like interacting with the secretary of—

A: Well it was the whole—the whole idea was centered around getting, uh, better services for special needs individuals. Not just the intellectual disabled but also mental health, uh, domain as well. And the, uh… it was trying to crystalize the kinds of services that were needed for that—for those populations. So that’s what the community collaborative was all about. And, uh, we’d met periodically and I don’t remember the overall agenda since that was so long ago but in the gist of it – the gist of it—that’s what it was all about: trying to crystalize these services, uh, identify the kinds of finances that was required in order to pull off some of these services or to implement these services. The, uh… At the same time, I was, uh, tapped to be on the mayor’s commission for special needs. I did that for a couple years. Uh, then after that, uh, I think, uh, not too long afterwards, uh I met, uh, Dee Coccia and Maureen Devaney and, we uh… before I knew it I was part of a Vision for Equality, you know on the Board, and uh, I remember we met at a little small Italian restaurant down in South Philly and it was so funny – I’ll never forget it. The music reminded me of The Godfather. They had the music in the background. I said: “Wow, golly, we’re living, uh Don… uh, uh, what was his full name?

Q: Corleone?

A: Yeah! (Laughs) I’m reliving Don Leone’s experience, you know, but that was so funny. But that’s how we got started with it – Vision Equality, Vision for Equality.

Chapter Eight: Lack of Opportunities Post-secondary School

14:20:10:06 – 14:24:35:11

Q: I wanted to go back, um, to Graynle’s experiences immediately after high school. Was there something…

A: Oh there was a real gap. A real gap, and that’s where my sister, God bless her… She really stepped to the plate. Sonya, my sister, was a homemaker. She didn’t work. Uh, but she did not have to allow Graynle to come to her house while we were at work. And, uh, that’s what used to happen. I would put Graynle in the car and shoot down to… Mt. Airy, and West Philadelphia,

drop him off, and then (smacks hand) scoot over to Norristown. The, uh, Norristown where I was a principal of a middle school. And so far about a, let me see… about the time he was 22, 25, or 26, my sister was basically the daycare worker for my son for about a four year period. And, uh, then, uh… I mean you’re talking about a stroke of luck. By this time I’m now the principal of New Brunswick High School and I used to make the run again from Germantown to West Philadelphia and then shoot up the New Jersey Turnpike to New Brunswick, so our day would start around 5:30 in the morning. By 6 o’clock I’m on the road to West Philadelphia. I had to be in New Brunswick by the very latest twenty of eight. At the very latest twenty of eight. And, uh, I was able to pull that off because of my sister. So one day, I’m on my way to New Brunswick after dropping off my son. I decided I’m gonna stop off at McDonald’s and get a coffee and a, uh, uh… egg sandwich of some sort. So I get my coffee and I’m on my way out, went to my car, suddenly a lady says “Mister… are you going to New Jersey?” I mean this is really strange. I said, I said “yes.” “Are you going near New Brunswick?” I said, “In fact that’s where I am going.” “Can I get a lift?” I’m saying no way, this is – I’m not sure I can handle all of this that’s going on right now. But then I thought she looked like she was in need. I said, “Yeah, come on, let’s go.” As we’re driving, she says “My daughter goes to Rutgers and I have to drop some things off for her today – this morning.” I said, “You’re in luck, because I’m going right next door to Rutgers, you know, right over there to Piscataway You know that’s right next door to – in fact, you can leave New Brunswick and not even know you’re Piscataway. Okay? I said “Okay.” So I drove her to the dorm, right up to her daughter’s dorm and went to school. But at the same token, I had shared with her I was trying to get my son into some kind of workshop and, uh, having a lot of difficulty. Well she worked at, uh, the, uh, West Philadelphia’s Elwood Center. Do you know about a month later, I got a call from JEVS, says “Graynle can enter?” Call it providence. I mean, you couldn’t write a script like, you know, to prowl out something like that. But that’s how it happened.

14:24:35:11 – 14:25:54:07

Q: If that hadn’t happened, what would Graynle have been doing?

A: Been on a waiting list. Yeah. He was on a waiting list for about four – between three to four years, yeah. It was a waiting list to get into a program. Yeah. So I don’t know what she did, but she did something that was very affective. Never saw here again to this day. If someone said, “What was her name?” I couldn’t help you. Could not help. I don’t know who she was. She may have been angel (laughs). Haha, that’s right. You didn’t believe in angels before, you might want to start believing in them now (laughs).

14:25:54:07- 14:28:42:15

Q: So Dr. Edwards, tell me a little about what Graynle did when he got to JEVS. I mean did the work – what kind of work was he doing? Would he benefit financially from it?

A: It’s a funny story. It’s really a funny story. When he got to JEVS, they said, uh, “Jevs has not been the same since he got there.” ‘Cause he’s a social butterfly. He didn’t talk at all – not at all.

But he has a way with communicating with people. And they just loved him. He just kind of lights up a place. Yeah, yeah, yep. Could not speak for one clear English word. But his way that he interacts with folks, it takes about (snaps fingers) that much to get a smile out of him. Okay, so he had a work station and, uh, he would spend a little time with his work station with a zillion prompts – you know, you gotta do this, you gotta do that. And then it wasn’t long before he’s up from his work station, he’s going to different people’s work stations. He’s not doing other things but socializing. And that went on for a few years. And uh, I used to always laugh when he brought his little paycheck home. Every two weeks he got a paycheck. One-twenty nine. One dollar – twenty nine. Two-twenty. The big check was like three something. That was the biggest. And I used to always tease him about it – “They make more money in Russia than you do, buddy. You know what I’m saying?” (laughs). So it was, we used to have a big joke about that. So he spent several years in the workshop until they reconfigured their program. Uh, they decided that they were going to emphasize world of work experiences for those individuals who could in fact go out in the real world and work with – they had to work – some individuals went to a continuous workshop program but many went into what you’d call world of work experiences with coaches. And uh, given Graynle’s tendency to do little to no work, they decided they think Graynle needs to go to a social program and, uh, we agreed. And, uh, he’s been enjoying himself ever since.

14:29:17:00 – 14;31:49:18

Q: I know parents had very strong feelings often one way or the other about workshops and I wondered ultimately where you came down on that?

A: Yeah, yeah, yeah… The, uh… I could see that the work was monotonous. Ain’t no question about that. And for someone to survive in that environment, um, they really had to want to be there to be successful. And there were some clients that were successful. They were really hard workers. But for someone whose, uh, tendency is to move about, socialize, that was, that was not a good place for him. In fact, he eventually, his job eventually became one of taking the trash bags around from one station to the next and I’m not sure whether it was to discard – I’m sorry, were they supposed to place products in the bag or just trash in the bag? I think it was trash. And, uh, he did that, of course, but he had to have an escort. Someone had to escort him to make sure that he did was he was supposed to do. Uh, that might have been his most productive work. You see, but uh, in terms of his own willingness to engage in that kind of work it just wasn’t there. Just didn’t want to do it. And, uh… and there were enough individuals who were trying to get him to perform. And of course one of the staples of the kind of work where Graynle was the prompts. You had to do the prompts, do the prompts. And with the prompts he would perform up to a certain point. Then he’d reach a point where even the prompts wouldn’t get him to—to perform. So to suspect over a five hour period Graynle was going to be productive for four and a half or four of those hours, it just wasn’t gonna happen. It did not happen. So we came to the conclusion that the social program may be the best for him, you know, given the fact that he’s a social animal (laughs).

Chapter Nine: Dr. Edwards Advocacy for Children and Adults with Disabilities

14:31:49:18 – 14:39:29:04

Q: So, Doctor Edwards, I wanted to talk to you a little bit or ask you a little bit about some of your advocacy, um, and when it is you feel you really became involved in the movement in earnest.

A: Uh, let me see, in earnest… uh, well I think that, uh, I think my most effective work was… was performed in my educational practice as a school administrator. Okay. Every place that I’ve gone, it has been extremely important to me to see to it that the students – special needs students – got the best that our resources would offer. I did that at Eisenhower Middle School, I did it at the— my High School in New Brunswick, I did it at Chester High School. So I was working you might say on the ground, uh, on the ground from that perspective as opposed to doing a lot of demonstration in the streets. Uh, periodically I would be called to, uh, to speak at one of the gatherings. Uh, I remember on two occasions, uh, they had this big powwow and I forgot what hotel it was in but it was a major hotel. And we had the, uh, we had some of the representatives of state – state workers there who came out of the department of uh, of welfare who basically were letting us know how the state felt about certain issues. And I was incensed. And I just got up and I said: “Listen, we’re kind of sick of hearing you guys who are apologists for the state. You see, it’s important for us to begin to establish an, uh, an agenda that’s going to see significant changes for the special needs population. So that was at one meeting. Another meeting we had down at the Fireman’s, uh, I guess it’s their headquarters on 4th Street? 4th and Arch, something like that. 4th and Race. But anyhow, I remember speaking about the, uh, the need for us to be a lot more assertive – a lot more aggressive. And protecting the rights of our children. Uh, we spoke about, uh, I spoke about the kind of money or savings that we make for the state when we allow our children to state at a home. You would think that they would bend over backwards to try to find the kind of money that we’d need to sustain them in a home situation. I said you need to stop walking around with your hat in your hand looking for a handout. You need to be a lot more demanding. I remember going to Harrisburg with Dee, this was funny – it was startling but it was funny. We went to Harrisburg – a group of us – we went to speak, and uh, Graynle and I were there, you know, he was sitting here, and of course I made my statement and then we went upstairs and we spoke with, um, John White, right? This big, great big long mahogany table must have had thirty people sitting around it, right? John White was there – he was the secretary of welfare at the time, right? And, uh, we started talking. And John was talking, John was talking. Now he was a friend of special needs, okay, John White was a friend, right? He started talking. Dee jumped on him started hollering and screaming. I said “Hey Dee, he’s a good guy!” Dee didn’t care, okay? Because she felt that he was not moving as fast as he should have. But it was so funny, it shocked me! (Laughs). But that was another kind of advocacy of the… out there in the world, outside of my building. Of course my work with vision for equality, I was on that board for several years and then the past – it’s amazing how time flies – past five years I’ve been a part of the Disability Rights Network

on their board. We’d meet quarterly out in Harrisburg. Uh, so these are some of the things that I’ve been doing. I remember something rather interesting when I went over to Chestnut High School. The teachers were complaining about the special needs children. They create this problem, that problem, that problem. I said okay – we gonna collect some data. Okay? We gonna collect some data. We gonna find out – we gonna find out who’s creating the problems in this high school. Well needless to say, the special needs weren’t any more problematic than the regular kids. So that put a stop to all this business about the special ed kids, you see, because you put the data out there, you know, you know. You have to speak the truth. Now here’s the data, let’s stop this nonsense about the special needs children. Uh, you see one of the problems, see, this is one of the problems with the special needs children. There are a significant number of staff member who had major problems with how the discipline code made accommodations for special needs children. Oh man, some teachers had major problems with that, you see. And the thing is, you know, hey listen this is the law so you just got to learn how to deal with it. This is the law. And I think that prompted some of the bias towards the special needs students – they’re the trouble makers. They’re the – well they weren’t the trouble makers, you see. Uh, so, so so I did advocacy in different kinds of ways. In some instances out there speaking in public but more often than not in my buildings making sure that those special needs children were treated, uh, equally, and properly.

14:39:29:04 – 14:40:27:09

Q: Is that the area where you feel you were able to affect the greatest change?

A: I would think so, yeah. I would think so. Now, of course, some people might disagree with that (laughs). Uh, but the, uh… you know, I’ve never really thought about it that way, uh, I just thought that what I think was important was that in the, uh… that, that wherever you are, or wherever you were, you are able to have some impact and I think, uh, I think I was able to accomplish that. Yeah.

Q: I’d like to ask you just a little bit about some of the parents you advocated with.

14:40:27:09 – 14:41:49:12

Q: What was it like connecting with those parents?

A: Well, you know the, uh… It was really just a new experience for me. Uh, in terms of working with parents outside of my professional experience. Uh, because the, uh… We were all out there as volunteers and, uh, it was just heart warming to me to see the dedication that those ladies were able to make, uh, in that environment. It was, uh… And they were hard workers. Now I just learned a couple years ago from her daughter, Katie, how… she had her whole family out on the street at one time! Uh, advocating for special needs citizens. I said “I didn’t know that.” I did not know that. I just noticed that she was a long-term fighter, a long-time fighter. Maureen was a lot more low keyed …

14:41:49:12 – 14:43:44:06

…but just as dedicated. Where, of course, Dee was a lot more fiery. Okay, okay. Um, and uh, uh uh with Leona she… in meetings you would not even know she was such a ferocious fighter because she was really low key in the meetings I was with her. I mean she was, she was vocal, she expressed herself but, uh, in terms of, uh, excitement, you know, that just wasn’t her style. The, uh, Miss Richardson, they just, uh, recognized her at the, uh, the meeting. Very long term fighter. But I’m a tell you – the first lady who really had an impact on me in terms of the need for advocacy was Edith Taylor. You probably don’t know that name. You do know that name. Well, I was in a meeting – Graynle could not have been more than 2-3 years old, maybe five – she stood up and raised hell. I said “oh… this is how you do it” (Laughs). Well she was the first fighter that I remember for special needs. Yeah, Miss Edith Taylor. I’ll never forget her. Sometimes I forget her name but it comes to me periodically. Yeah, so you know that name? Okay. Uh, it was–

14:43:44:06 – 14:45:53:14

Q: Doctor, I want to talk about a lot of strong women advocates and it’s interesting – there do seem to be more women—

A: There’s no question about it! No question about it.

Q: Why? Was it unusual for you as a dad to be part of this advocacy?

A: Uh, I don’t know the answer to that question. What I do know is that I suspect that my work – my profession – brought me closer to that arena than a lot of dads. The, uh… you know. I’m-I’m not quite sure how different dads are feeling about having special needs children but I know from my own perspective one of the things that used to always grate at me was how people would react to my son. And I suspected a lot of dads was feeling the same way. Uh, the uh… but again, as I said before, because of my profession I was drawn in to it and stayed there, you see. But you’re absolutely right – you see some dads, but the number of dads don’t come close to the number of women who are out there advocating for children. And, uh, you gotta grab some dads to fight to get some perspective or a consensus to see how dads feel about advocacy. The, uh, as I said before, I guess it’s because of my work I was drawn into it easily. Very easily.

Chapter Ten: Challenges for Parents Today

14:45:53:14 – 14:52:40:18

Q: So, in your opinion, Dr. Edwards, what do you see as some of the most pressing issues facing parents of kids with disabilities today?

A: Well depending on the severity of the disability, the past parents get older, they’re very much concerned about what’ll happen to their children when they’re gone. That’s a, that’s a… that’s really a major, uh, the uh… And I’m aware of the, uh… there is a movement afoot to try to make connections for special needs citizens once their parents are gone with actual families. I know that that’s gone on. I have not been active in that. Uh, the… I think that… you know, uh, as a parent, as Graynle’s parent, I think more about community living arrangements. Um, but the issue there is will he be placed in a home where folks are caring and provide him with the same if not identical, at least enough experiences where he feels comfortable? I mean, because right now he’s a spoiled little dude (laughs). And I don’t expect all of those kinds of things to happen for him, uh, you know, when I’m gone. But one of the things I’ve noticed about him is that people like him. And that makes me feel a little more comfortable as to how he might fare in my absence. The, uh, I’m reminded of what a gentleman shared with me – and incidentally he shared it with me shortly after what you had shared with me about how parents would like to see their child leave here before they leave here, uh, because of the fear of… that same level of care will be in place when they’re gone. And I understand that – I really do. I understand that. But as I said before, I’m comforted by the fact that so many people like Graynle, you see. And, uh, so that that… the community living arrangements is not the worst possible thing that could happen to him. It’s not the best, but it’s a long shot from the worst possible thing that can happen. Uh, the, uh… so, you know, the antennae are up in terms of what organizations are providing the best kind of support in that domain, and uh, continue to, uh, talk to individuals. Then one of my, uh… one of the persons I lean on is Steve Kinsey, because he, you know, he was in that field. Uh, I’m leaning on him to get the best possible directions as to how to go about that next stage. I haven’t finalized anything yet but that’s a concern. I know that’s a concern. Another concern for a number of parents is respite. The, uh, while there’s dollars out there to provide respite, what’s interesting is that there are a number of people who do that – there are some people who do that – you don’t feel comfortable with, you see. Um, and the fees are… are not bad. They’re not bad really, when you think about it, uh, for twenty-four… twenty-four hour period, something like a hundred and seventy dollars. Now that doesn’t come directly to them because the agency gets a piece of that action and there’s tax – taxes – but you’re not working twenty four hours by a long shot, you see. People do sleep. Um, the, uh… you do have an opportunity to sleep during that twenty-four hour period. So, uh, let’s say it’s a sixteen hour deal, and even doing sixteen hours you’re not totally engaged. So it’s not a bad paycheck as I see it, but the problem, though, is that there are… we-we-we (tries to find words) we have great difficulty in getting the kind of folks to do that – to provide that kind of service. Um, so that’s another concern. Respite. Another concern is the, uh, the appropriate health care. Um, the, uh… you really have to be on top of it all the time in terms of being assertive, being aggressive about what your child needs. Um, the uh… so that’s another area where you, uh… a great level of concern. And, I guess the fourth one is how people relate to your, uh… to your… to your children. And, uh, I’ve personally experienced that. There’s some family members who relate to Graynle as if he’s a normal human being. Other family members, you know, they will… it’s not, tolerant might not be the best… might not not be the best word. Uh, it could well be that uh, will, uh… what’s the word… will coexist. You know what I mean, you

know. He has a right to be here on the planet just as myself. But not overly aggressive in development of of real positive relationships. So there’s variations even within the family.

14:52:40:18 – 14:53:55:02

Q: Is that wounding as a parent?

A: Oh absolutely. Sure. Sure, the, uh… the – in fact that brings on certain levels of isolation. Certain circles don’t even want to take him because of the way some individuals relate to them – relate to him. Uh, the uh, you see, parents – all parents want people to see their child as a great human being. I mean that’s… that’s natural. You know, the uh… Often times I’m reminded of the story of the—the ugly duckling, you see. And the—how the other ducks responded to the ugly duckling, you see. And that happens in the human species as well. Some individuals have difficulty relating to individuals who might be different, you see. The, uh—and, uh, so yeah, it’s painful when you see—when your child’s in that environment and people are reac—are relating to him in that way. You don’t like that at all. Yeah.

Chapter Eleven: Relationship with Graynle Jr. and Reflections on Advocacy

12:08:21:06 – 12:12:33:17

Q. What is it about parenting Graynle that’s given you joy?

A. He’s a funny guy, you know. (Laughs) We have a lot of fun together, you know, for someone whose non-verbal he certainly knows how to express his emotions. Uh, the, uh, I’ll give you an example. We were sitting in the basement watching the big screen television basketball game and he walks up behind me with a big towel and throws and hits me right in the head. (Laughs) Okay so of course we end up wrestling and what have you for this short period of time. He does things, I always tell him that he is a, uh, he has criminal tendencies, uh, I’ll pour his juice which is, uh, has the sugar substance and my coke is over here; and I’ll, I can be distracted because I’m on the other side of the kitchen and the next thing I know he’s gotten my soda and he’s drinking it. I come over and snatch it from him and he busts out laughing, you know what I mean. He’s jut a jovial guy and god knows he just loves the ladies. God, he’s just a mess. In fact at his Saturday at recreation, one of the leaders said you know Graynle has a harem in here. (Laughs) But he’s very, for a person who is non-verbal, he is very social able. The folks just gravitate towards him. I think part of it is protection because he is non verbal, they want to make sure that nothing happens to him but, of course, as far as he is concerned, he just likes to be around the ladies, you know. He has a sense of humor. We, uh, you know, I’m constantly catching him doing something he has no business doing. Once he gets caught, he starts laughing. I tell him oh you’re trying to be slick again. He busts out laughing. It’s interesting the way Graynle works because his level of understanding things is unreal; it really is. So, he can

receive and interpret things but he cannot express them so that you know there’s some learning going on, um. I bought him a new record machine for Christmas because the ones that I was buying him, the needles were so fragile so, and you know, two or three days, I got to buy another needle. I got to a point where the people don’t even supply the needles any longer. So I went on the internet and found a company that he’s now had a machine for over a month. Oh, god. Thank you Lord. So, uh, the thing is, the, he’s, you can tell that Graynle can learn. It’s so obvious because you know, you see him doing something you don’t see him doing something today that he’s doing two or three days from now. Something new, in fact that’s one of the classic lines that are always given. (Inaudible) Graynle you’re trying something new again! Too often the something new is something he shouldn’t be doing but you can tell that, uh, that there’s a mind that’s really working there. Its just he can’t verbalize. Yeah.

14:53:55:02 – 14:57:14:16

A: For someone who’s nonverbal, uh, he’s just a funny guy, you know. Uh… I’ll give you an example – I’m driving down the road and he decides he wants to give me an elbow. (Laughs). Of course, I’m glad he’s not as small as he is because I’m able to sustain the blow, you know, but uh, the, uh, he has a way of coming up and his first attack is to go into this karate thing. When that doesn’t work then he tries to step on my foot, okay. All that’s, that’s all of his way of trying to have fun with you, you know, and uh, often times in the morning he’ll come out of his bed, and sit on the side of my bed and leans back-he needs to have the TV on in my room, so he gives me the remote. Okay. So I turn the TV on and he sits on the side of the bed, and then he leans back, you know. And we have ways of just having fun together, yeah. Uh-huh. And then, of course, we go to the different, uh, games – basketball, football. And it was so funny – one day we went to, uh, we were at the Spectrum I believe. Yeah, it wasn’t, it wasn’t the… the Comcast – that’s the new building. This was the old building. And uh, we-we start, we start to enter the stadium, I’m sorry, we start to enter our section in the stadium but it’s the wrong section. So I grabbed his hand and said: “No, we gotta go…” Man, you want to see him fight! You know (Laughs) “Listen, I was on my way in, and now you’re pulling me out again? (laughs) That was so funny. I called him fool. I said “Fool, no, no we gotta go in this one over here.” He followed me later so we went into where we should be, you know. But he enjoys it. And the band, you know – we go to the Temple games -- and, uh, we, uh… I did something that was smart when they built the new stadium. I went—I didn’t deal with the Eagles stuff because I know it’s hard to get the Eagles tickets. Especially the price that they ask for the seat that you want. I said “Nah.” But I said “I’m gonna make a deal with Temple.” And we got season tickets on the front row right behind the football team. Okay. Well what happens when the band comes off the field, they come right into our area where we sit. Oh, he just loves that, you know. Oh, God, he goes crazy. Here comes the band, you know. And, uh, so we have a good time. Yeah. We have a good time.

14:57:14:16 -

Q: You were describing earlier some of the leaders of this movement and, uh, I wonder if you consider yourself a leader?

A: Nah, nah I’m just a soldier. I’m just a soldier. The, uh… I guess a soldier who has had an opportunity to lend his voice to a movement. Uh, the uh… I would, uh… I would like to be perceived in that fashion. Not necessarily as a leader, but a soldier who thought it was important to be a part of the battle.